bjhunt01 therapy help thread

[bjhunt01]

Hello all: Pugsy asked me to start a separate thread to receive help with the problems I'm having. I'm on mask #9 since last Sept. It's the Bleep. I believe this is about day 8. At first it was about "mouth taping issues" and appeared under that thread. This has been a huge problem all along and I now have the right tape and am taped to the gills for the past few days. I'm a mouth breather and also talk in my sleep and have a narrow nostril with stuffiness/allergies. I've had bad jaw drop and then creepy sounds coming out of my throat even though my mouth is taped tighter than a tick, but the last few days have been better with the paper tape. I can't wear a chin strap because I have scalp allodynia.

However, I can't get, because I don't know how to get, all my settings correct. I posted my 6-11 Oscar in "mouth taping issues" and I received several suggestions under the other thread. One comment made was that the minimum pressure of 4 all this time was too low so I increased that to 6 and turned EPR up to level 3. I turned off the ramp. I am going to attach 6/12, 6/14, and 6/16 all of which I blew and even had a Cheyne Stokes.

After that I'll attach my stats from the beginning. You can see I've struggled from the beginning. Probably because of the low minimum for one thing. Face masks leaked, so did nasal, pillows are awesome but straps are murder on my head. So now the Bleep.

Then I'll attach last night, 6-17, which looks a lot better. On that one I upped my minimum to 6.4, upped maximum to 10. Even tho my chart doesn't say so, I turned the ramp back on. I put the EPR back down to 1. That went OK until late morning when around 9:00-9:30, it woke me up with my cheeks blowing up. I was so well taped I couldn't blow it out through the tape. The weird looking thing at 5:40 a.m. was me lying in bed reading trying to get back to sleep. Going to bathroom.

I would be so grateful if all of you with experience and eagle eyes could look at these and make any suggestions. No one has ever told me that 4 was too low until I got here! But apparently it was. And that my maximum was too low. And maybe it has been. So any other things you see, do please let me know. I am a night person and I know this is bad and am moving to getting myself in the bed by 10:30 starting tonight and hoping to be asleep by 11:00. I have noticed that on almost every chart, I start having problems sometime around 9 a.m. so getting up by 8:30 would be a miraculous help I am betting.

[bjhunt01]

These are my stats from the beginning.

[bjhunt01]

This is my Sleepyhead from last night 6/17. It looks a lot better than the others.
I upped the minimum pressure to 6.4, the maximum to 10. Changed the EPR from 3 back to 1. Turned the ramp back on though it doesn't show. The weird thing at 5:40 a.m. is me lying in bed reading trying to go back to sleep. This happens a lot around that time or 6 a.m.
I did pretty well except that about 9 a.m., my cheeks kept blowing up, waking me up, and I couldn't release the air as I was taped pretty tight. This kept happening so I took the mask off, went to the bathroom and started over and then gave up. So maybe 10 is a little too high. I also felt very tired and fell back asleep until about 12:30 without a mask - big snoring. For tonight, Pugsy told me to turn off the EPR.

[Pugsy]

EPR use, because it creates a bilevel situation, can actually trigger central apneas in a very small percentage of people.
That's why I wanted you to turn EPR off...see what happens in terms of the number of central apneas.
Looks like EPR at 1...isn't bad though.
Let's see what happens with no EPR tonight ...assuming you can handle it. Turning EPR off (or even reducing it) effectively increases the pressure minimum a bit and that will help with the obstructive stuff. Might not need that 10 cm as much.

[bjhunt01]

Pugsy: Thanks - will do! Have a good evening!!

[bjhunt01]

So here is my data for last night with EPR turned off. Sleepyhead says my Ramp was off but it wasn't. It was on and set for 45 minutes.
I was dry and coughing so upped humidity from 5 to 6 during the night.
One of the things I notice with Bleep is that the inhale is noisy - a swishy sound. It also makes noise from the connection if the tube isn't perfectly straight. And my SnoreLab app records those. I use earplugs to drown that out as I'm usually a light sleeper. I'm not sure what was going at that leak area from approximately 5:45 to 6:15, but I see that SnoreLab shows me to be or Bleep to be more noisy during that time.
At arousals, I felt I was having some trouble breathing. And once again at the end of the sleep cycle, a mouth full of air bloating my cheeks kept waking me up. I was burpy and full of air. SnoreLab has also recorded those lovely pig rooting sounds when jaw drops and tongue detaches from roof of mouth. With the tighter taping I hadn't had those sounds the past few nights so I'm wondering if some change in settings caused that.
I've never seen the respiratory rate and expiration charts look so bizarre so I'm attaching those too in case that means something I don't understand and someone does.
I think I was generally wiped out which may be why I slept so long.

I would be grateful for any suggestions.

[Pugsy]

The Bleep is silent when properly connected.
The only time you should be hearing anything is
1...something isn't connected properly
2...you might be hearing the vented air bouncing off something....did you fix up any sort of diffuser? I have a spare ResMed filter up next to the vent holes and I get zero vent noise. Since you say you notice only if the hose isn't straight my first thought is that the vented air is bouncing off something like your arm or bed covers or whatever.

Your respiratory rate and graphs look whacko because the machine is double counting the respirations. I bet if we were to zoom in you would see the ballistocardiographic effect show up. The machine just double counts because of the echo.
viewtopic.php?f=1&t=175809&p=1305648&hi ... c#p1305648

viewtopic/t175532/Respiratory-Rate-wron ... diographic

That can safely be ignored.

Your centrals have reduced considerably by just turning EPR off...what's left is normal and nothing to worry about.
From that other report with EPR at 1...you could probably get by with that also.
Give yourself a few more nights and see if things stay this way and if they do then you know that you are a member of a very small percentage of people that having EPR or PS (pressure support) by having separate inhale and exhale pressures happens to cause centrals.

Unfortunately the very thing you could do to help with the aerophagia issues...having more EPR ....is going to cause centrals.

I assume you are taping your mouth....is the tape staying in place securely or coming loose somewhat? That might account for the leaks...tape came loose and your mouth fell open.
Usually if the Bleep itself is leaking from incorrect attachment of something you will have consistent leak all night long.
Unless maybe the cushion that fits in the groove right above the vent holes is just off in one tiny area...if not fitted correctly in that one area it can cause intermittent leaks that can be worsened with movement.
My first guess though...the tape on your lips came loose.

[bjhunt01]

Thanks Pugsy. I'll try this without EPR a few more nights although I wasn't that comfortable breathing - wasn't major. The biggest problem was the air filling my cheeks on the second half of the night and waking me up. It's possible my tape came a little loose as I had to loosen it to get some water about 6 a.m. and retape. So one more time tonight! And we'll see how it goes!

The soft noises on the inhale with the Bleep have me puzzled since you say and others do too that it is silent, but it's not for me on the inhale. I do check carefully my attachments before going to bed and all is in place. I wonder if it's because I have some trouble breathing through my nose?

[Pugsy]

Chipmunk cheeks....search the forum for it....lots and lots of past discussion about it.
Essentially what happens is the air goes in the nose and into the airway up right behind the nose then it starts down the airway and instead of proceeding downward like it should it enters the mouth and with lips shut...cheeks inflate.
The trick is to keep the air from entering the mouth which is easier said than done. We can keep the tongue in place so that it acts like a door and blocks the opening from the back of the mouth to the airway easily while awake but when we go to sleep the tongue no longer stays in place.
It's not all tongue placement that keeps that back door shut...but the other is reflex action and I can't explain how to do it on demand.
We tell people to work on tongue placement and often with time and experience they can stumble on the reflex that keeps the oral cavity free of air. I can talk, stick out my tongue, open my mouth wide, yawn...all while wearing my mask with the machine on and I have zero air enter my mouth...even if I open my mouth and if I am sticking my tongue out then obviously it isn't planted in the roof of my mouth to act as a door that way.

It's a very common complaint and extremely annoying for sure.

Doesn't surprise me that you weren't entirely comfortable with EPR off...you had been using EPR for quite some time and your body just got use to it and expected it. If having it off is uncomfortable to the point you just can't sleep ....try 1 EPR....
Sometimes there is a fine line where people have a lot of centrals from pressure support (which is what EPR does).
I have a friend who gets around 15 centrals and hour with PS of 4 (think EPR of 4 if the machine would do it) and if she drops the PS to 3....essentially no centrals beyond a rare normal sleep onset central. So sometimes people can still use EPR / PS if they need it if they are lucky enough to find a line like that.
You can play with EPR and see if you have such a line....your report with EPR at 1...wasn't bad and I would take it if it meant I slept better. Would be an acceptable compromise if turning EPR off totally just was too difficult right now.

[bjhunt01]

Thanks Pugsy. I'll search for Chipmunk Cheeks. I'm glad you explained that there is a reflex one can figure out to keep the air out of the mouth. I have had rare seconds when that happened so I can work on recreating that for longer periods. I don't know how I did it but with practice I think I can figure it out. I think this would be a major improvement in my sleeping life. It's been troublesome since the get go and even now with a good job taping my face up, my tongue still comes off the roof and off we go waking me up over and over. Unless I drug myself with Benedryl and clonazepam and melatonin. And sometimes I still wake up and can't sleep. Last night was one of those.

What is "PS?" I've seen that in other posts but don't know what it is.

Here's last night's screen. Good numbers. A miracle! But I felt like I was having trouble breathing - like getting enough air through my nose and into my lungs. The spike at 1:20 was a coughing fit. I couldn't sleep from about 4:30 until maybe 6:45. Somewhere in there I thought of lowering the pressure from 9.40 to 9.00 thinking I was getting chipmunk cheeks from too much pressure and maybe that was causing having trouble breathing. A bit of pig rooting sounds off and on. I was so frustrated with being awake and having the tape all over my face, I took all the tape off about 6:45 to see if I could 1. go back to sleep and 2. keep my tongue on the roof of my mouth. That was a major fail as you can see with the leaks there. So I gave up and got up.

I'll try EPR of 1 tonight as you suggested.

Again - I had the Ramp on and set for 45 minutes even though Sleepyhead doesn't indicate that. I notice that on this and others when I had the ramp on, that the flow limit looks better during the ramp period. I don't quite understand what flow limit is but I think it shows how much trouble or not one is having breathing - yes? If so, it seems I breathe better at those lower settings.

So today's questions: should I make any changes to my minimum and maximum pressures? Should I continue to use the Ramp at 45 minutes? Does anyone use an oral appliance like a mandibular adjustment device to keep their mouth closed along with their CPAP? If so, which one(s) keep the mouth closed? Do you see anything else I need to do/change?

I'm so grateful for your help and suggestions! Thanks - keep em coming until I get this right!

[Pugsy]

PS is pressure support....simply the difference between inhale and exhale pressures
EPR creates PS when we use it...different pressure for inhale and exhale...
Example....inhale pressure of 12 and exhale pressure of 10...that means PS of 2 or EPR at 2.
The PS terminology is commonly used when a person is using a bilevel machine....but the function of PS and EPR is the same...EPR is just limited to a max of 3...PS on a bilevel machine has a much higher maximum available.

Ignore the fact that in the SleepyHead settings it is saying that ramp is off. That's a little bug in SH that can affect the settings.
Mine often tells me my humidifier is disconnected when in fact it is definitely connected and working it's little heart off.
The settings bug...SH doesn't always get settings correctly shown...Ignore it.
We can see that ramp is working.
When in ramp...the machine does NOT flag anything...that's why your FL graph is so pretty while in ramp.

Try turning the ramp off an not using it along with the change to EPR of 1 tonight.
Or really shorten the ramp time if you think you really need ramp.

[bjhunt01]

Ok -got it. Darn! I thought I just needed to sleep in ramp and my problems would be solved - ha!
So I'll do those things. What about pressures. Should I make any changes there?

I was at 4 when I came here and it was suggested to put it at 6 and maybe creep up. I'm at 6.40 now.
It was suggested to put max at 10. I've waffled with that at 10, 9.40, 9.

What minimum and maximum would you suggest tonight with turning off the ramp and EPR at 1?

Golly I don't know what people would do without this forum. I started in Sept. and absolutely floundered with little and incorrect help
from my cardiologist (thank him for getting me a home study but knows not too much) then tried a Sleep Doc. That story about him, his
lab, staff, and office is tooo long to go into. But anyway my point is no one explains the kinds of things I am learning here and
never even knew. Makes me wonder how many haven't discovered this online help and are just getting worse and worse.

Thank you Thank you Thank you!!!!!

[Pugsy]

Refresh my memory as to why you were limiting the max so severely......
The machine wants to go higher (see that pressure graph line go up to your max and pretty much stay there) but if you are limiting the max due to problems with higher pressures (like aerophagia) then allowing the machine to go higher may create another problem.

I would leave the minimum alone for now...it's doing a decent enough job stopping everything but the flow limitations.
And if you were sleeping good and feeling good then killing those FLs might not be so urgent especially if killing them created a new problem.

The only reason to limit the maximum is if higher pressures cause problems like aerophagia. If you aren't having that issue...increase the max and see what happens.
My minimum is 7 and my max is 20....sometimes it goes to around 15 but doesn't stay there very long. Most of the time I might average around 10 cm. I need more pressure in REM stage sleep..so my excursions higher are usually short lived.
Higher pressures don't cause me any problems though. I sleep through them just fine and no aerophagia issues.

[bjhunt01]

Hi Pugsy: Re maximum pressure - so in the beginning I just didn't know any better. I started out at 15 and was belching and burping out both ends. I called my cardiologist or emailed him and he told me to change it to 6. Now that I know a few things, it would be interesting to see if I did email him and his response meant change the lower to 6. I saw that the machine came set for 4 and didn't think I could raise it so I guess I thought he meant upper. I didn't know how to do settings then. My DME provider sent a guy over who gave me a machine and a mask and showed me a few things and that was my introduction.

Anyway...as I have progressed through all the 8 masks that haven't worked - leaked, blown off my face, etc. - I've experimented with raising it little by little. Up and down in the desperate search for ideal. But I never had the right mask to work with either. Now I do I think. I had a pretty good month in March and early April when it was at 7.40 and I don't remember which one of the many masks I tried then, but it was never consistent. I'd have a good day and think "Aha - I've found the right pressure!" And the next day with the same settings have 12 AHI's. So I just haven't known what I was doing. As I read articles looking for what "should" pressures be, I discovered it's individual. The higher the pressure the more leaks I had and mask blow off, little sleep and lots of fatigue, so I was staying away from high settings.

Then I came here and one of you said my 4 minimum was too low and to raise it to 6 and to try the upper at 10. Obviously the Bleep can't blow off, but a couple of nights I lowered the pressure from 10 to 9.4 and another I think from 9 to 8.6 because my cheeks were filling up and I was having trouble breathing. Once I was taping well, I started getting Chipmunk Cheeks and more pig rooting in my throat usually the second half of the night. So I assumed pressure was too high and tinkered with lowering. Have also raised the minimum to 6.4 now. So that's my story.

I am willing to continue to experiment with anything - any number - until the CPAP God blesses me!

You can see the crazy, all over the map experimentation I've done as I tried to find a mask. Besides lots of leaks, my other main mask issue was the straps as I have scalp allodynia. So if a mask leaked I couldn't tighten it without waking up without a migraine or other brain busting headache. Here's something interesting: I've had a migraine every 3 or 4 days for 35+ years and as of today I haven't had one in 21 days. So grateful - don't know what all the causes may be as I have been changing foods and medications and lowered estrogen replacement dose. I think CPAP therapy is helping that. Just haven't gotten it right yet, but thanks to your feedback and others I'm getting there. I think upping my minimum from 4 to 6.4 has helped a lot.

Sorry the story is so long about why I was avoiding high pressures. They seem to cause breathing problems or before Bleep, leak and blowoff.

Now - breathing and balloon cheeks was occurring with the EPR turned off the past few days but I got great numbers at 9.8 and 9 and great numbers at 10 with EPR at 1, but not restful sleep because I kept waking up with the balloons and breathing issues. And all three nights I my minimum was 6.4 instead of 4.

I did a lot of reading today on the site. I tried to go back and find a reference and can't so I may get this wrong. It was something about setting your minimum 2 cm lower than either the Medium or the 95% number (can't remember which). Is that correct?

[Pugsy]

I tried to go back and find a reference and can't so I may get this wrong. It was something about setting your minimum 2 cm lower than either the Medium or the 95% number (can't remember which). Is that correct?

I don't hold to that 2 cm thing myself especially when people are using the 90/95% number to base the settings on. 95% numbers are simply too potentially widely varying to put much stock in them. I might have a 90/95% number of 18 one night and the next night it might be 11.
If I am going to use that 2 cm guideline it would be off that median average.

I probably told you max of 10 to get you in the ball park and hope it didn't cause much belly issues but without seeing the reports it was just a guess to get you in the ball park and hopefully keep the aerophagia monster away.

You are using your max almost all night anyway...once ramp is over the pressure shoots right up and pretty much stays there.
We can't really tell much about your 90/95% pressure at this time until you were to let the machine have all the room in the world to roam and then see what the 90/ 95% numbers might end up being.
With you pretty much pegging the max out all night...the 90/95% number is going to be up there anyway.
Remember the definition....the pressure that you were AT or BELOW for 90/95% of the night. That "or below" is very important.

There is no urgent drastic need to increase the maximum at this time....if it were me I think I would work on resolving the mouth and chipmunk cheek and leak issues first.
The chipmunk cheek thing can happen with as little as 4 cm straight pressure...or it doesn't always happen...I see 15 cm fairly often and I never get chipmunk cheeks. It all depends on keeping that back door closed no matter what the pressure and it's not the pressure that is moving the tongue out of the way...
Did you know that 20 cm pressure won't even blow up a balloon? No way could this pressure move the tongue.

If it were me I would target these issues first before I started messing with the pressure just to go killing FLs that may or may not be much of a problem and if killing FLs caused a bigger problem like bad aerphagia...I wouldn't be trying to kill them as long as the AHI is low and a was able to sleep. FL killing would be on the back burner to be saved for a later day once I had these other issues sorted out.